Hi, everyone. I just joined because I realize how isolating it can be to suffer this alone. I feel like my family and boyfriend try their hardest to understand, but there are days I just cry in my bed from the pain. This summer, my body slowly started to deteriorate. I used to be able to work our a ton! Now I’m lucky to get a 20 minute walk in. The hardest part is that I feel like my body is betraying me and I feel so disconnected from it. Does anyone have any advice on how to cope as a newbie to fibro flares?
Welcome Christina
It can take awhile to ajust and find the right combination of meds, exercise and foods that help you to feel better. I went many years working with few problems. If you have not done it yet find a good doctor. Keep a diary of the foods you eat and see if any make things worst. Keep a pain diary to show your doctor and see if any thing makes it worst. Remember you are not alone.
Several members have found warm epsone salt baths help. Yoga, massage, water therapy.
I’m sorry you are going through a rough patch, but this is finite. It can get better. Whenever we begin to deteriorate, it’s time to get in to see the doc. Though meds don’t make everyone 100%, they can help. A ton. Please get in to see your doc. Like purplebutterfly says, with a good treatment plan, you can feel better. You can get some of your life back.
In the beginning, I think, we worry a lot about what our family thinks or if they really “get” what we are going through. Really, it doesn’t matter. We need to focus more on how WE feel, and learning to cope with having a chronic illness.
For now, take time to rest, and really take good care of yourself. Hot baths with Epsom salts (1-2 cups for a tub of water), lavender in your bed (for sleep) or in your bath before bed, hot packs on your joints and lower back, Melatonin (it’s OTC, and can help with sleep - check with the pharmacist for drug interactions), Tylenol or ibuprofen for pain, a TENS unit (these are also OTC now and can help with muscle pain), and a gentle exercise program are all things that you can do now to help with pain until you are able to see your doc. You want medications, a counselor, AND a good PT program. Acupuncture has also been shown to help, so if your insurance covers it, don’t be afraid to try it.
Good luck, and stay strong.
Hi Christina! I’ve found that regular activity seems to help me. I can relate to feeling like you don’t want to get out of bed or when you do any type of excercise, you pay dearly. It took a while for me to really get in touch with my symptoms and recognize things that make them worse. I had a physician tell me you want to crawl, walk, and then run and don’t do it in reverse. I used to be very active and on my good days, I wanted to go right back to that same level of activity. That was a huge mistake on my part. Allow yourself to take it easy when you need to. One thing that helped me was trigger point injections because I experience horrible muscle spasms. It’s also helpful to talk to people who can relate to what you’re going through. I definitely needed validation that I wasn going crazy. Hang in there!
Welcome to our amazing community. I am so sorry that you are suffering so much right now. Sending you hugs. Some movement is better than no movement. When I feel up to it I go for a walk and again judge on body feedback on length and speed of the walk, and then there are days that I have difficulty walking to the bathroom, but see that as an achievement on those kind of days. It really does take time to find that right combo. I just started some new meds and don't want to jinx it by saying I think there is improvement, LOL. I am always looking for something new to try that might help. I think what is key is we don't give up. There are so many suggestions throughout this website to try or research to see if it is something you might want to try. And you are not alone, as matter of fact this is a wonderfully large and active community full of people who really understand what you are going through. Hoping your flares become more manageable. Lots and lots of hugs to you!!!
Welcome Christina!!! I understand about feeling disconnected from your body at times, almost like it has a mind of its' own. When I feel that way, like my body is betraying me, I try to turn that thought pattern around and focus on all the good things I have going on. I appreciate things much more than I did before. One of the hardest things for me was learning to say no at times. It is important to learn what our limits are (that usually takes time to figure out) and also to be kind to ourselves when needed. As several people mentioned, it is important to have a good doctor on board and to communicate with them about your symptoms. There are a number of medications that can help and your doctor should be able to help figure out which ones to try. Also, there is an excellent article called the "spoon theory" (you can Google "spoon theory" and it will come up) that helps gives others' a perspective of what life with a chronic illness is like. This might be helpful to share with family and friends. Hugs!!!
Hello Christina! I am in the same boat right now. Just diagnosed recently after symptoms rapidly worsened. I too am having a hard time coping with the reality that this is my new “normal”. The group members here are wonderful and it’s been a huge help to me to have people to talk to that understand. They have helped me through several tough days this month! I hope you find this site as helpful as I have.